Dear list member,
I guess, after 5 years i am also one of the "old timers." From the
beginning the Parkinsn list was my source of strength for coping with my
diagnosis and then for learning how to face life with PD. In the past
this list was about people sharing information and understanding and
offering hope to each other. List members responded to pleas for grass
roots advocacy and worked together to help pass the Udall bill, and
increase funding for PD in other ways.

But I have also felt that for some time the list has beeen loosing it's
focus.  By the end of the day, I often now find my mailbox with only a
few messages about PD, but full with personal messages and disagreements.

   I have to agree with Jorge's Romero's statement " this is NOT meant to
be a social list, but a list in which PWP and their caregivers discuss
issues related to PWP and caregiving for PWP...This list started out as
an exemplary resource for PWP.  I would urge that we support any effort
to return it to such function. "

I think Simon offered some  excellent suggestions, perhaps a list this
size does need some level of moderating. Maybe Simon and Barbara would be
willing to look at the policies of the other Parkinson's lists and come
up with one that would be workable with PIEN?

To Katie Wolfe - a belated welcome. You may be new to the llist, but your
message reflected much insight into the problems that many others
recognize and are finally talking about. I think the perspective of a new
member is a very valuable indication of how this list has wandered from
its original intent. Stay with us Katie -- hopefully this discussion will
be a new  beginning.

TO New members - just to let you know, newbies were welcomed very
differently in the past. No  one was  told to search the archives for
answers to their questions. I'd like to share just a portion of a
newbie's welcome from last year from which I found in the list Archives
.I have removed the writers'  names from the excerpts below and hope if
any of them are still on the list, they won't mind seeing their words
being reposted here.

Within about a day there were many other replies such as the folloiwng to
"Tell Me More."

Date: September 17  3:39 PM
To: PARKINSN LIST
Subject: Tell me more!

 I am a 47-year-old female who has just been diagnosed with PD. So far, I
just cannot use my left hand very well and get shakes when I try. My left
leg is also starting to get the jittery feeling. Also, there is the
problem with rigid muscles which is the worst!
 I guess I don't have much to complain about except lack of information.
The doctors (and I have seen many) don't seem to want to give you any
info. I am starting the drug [pramipexole] and am having some difficulty
with nausea, but since the dose is still not enough I haven't gotten any
relief from my symptoms.
Do any of you know anything about this drug and what I can expect?

 I have read everything I can find on the Web but that is just too
depressing. The doctors say don't worry you should have many years of
productive living...
 What can I really expect? How long will I be able to continue to work (I
do accounting and use the keyboard a lot which is getting very hard to
do)? Should I be planning for assisted care soon? I know these questions
are unanswerable but I wish someone could give me a ballpark figure...say
5-10 years before you will require help with daily chores...or something!

I sure all of you went through this period of confusion. During the day
my husband and I discuss where we will put our backpacks on the next road
trip, at night alone in my thoughts I wonder where we will put my
wheelchair . . . I would appreciate any answers to unanswerable
questions. Thanks.

Subject: Re: Tell me more!
 4:55 PM
Dear    '
... I was diagnosed at age 44 and practiced until I was  about 52. But
things are getting better. [Pramipexole] may slow the progress of the
disease and certainly if that doesn't work as far as symptoms go there is
always the gold standard [levodopa] which will almost certainly bring you
back to near normal.
…Also, there are surgeries which are being improved on all the time such
as Deep Brain Stimulation which are helpful if and when you reach that
point. While PD is an awful disease, the cure is not far off…so it is my
hope that you and I will see it and hopefully before you get
significantly  debilitated.
Regarding doctors that you are seeing I suggest that you at least consult
with a Movement Disorders Specialist. Unfortunately,… there are many MDs
who don't know about the latest trends in PD care and may treat you as
they were trained 10 or 15 years ago.
 Good luck and please feel free to email me at any time.

 5:17 PM
From:

... I wish I had specific answers to your questions or even answers that
you "want" to hear. If I am understanding your main battle right now is
coping...understanding...living with this disease. You will need to find
a neurologist that you feel comfortable with and trust. A good  medicinal
program is important as well. Of course support groups and love and
understanding from friends and family will help too. I will tell you this
...you are not alone...although that is really how you feel right now. If
there is anything I can help you with ...my e-mail is . . .

 8:40 PM
 From:

I was officially diagnosed August 1994 and like so many, had symptoms for
some years prior to dx. I was 45 at the time of dx.
. … This list has played a very important part in my attitude, education
and decision-making. The most important benefit of this list for me has
been education!!!! The saying that knowledge is power, in this case is
very appropriate!! I have learned so much and with that learning it has
been an opening door to better relationship with my doctors. I continue
to educate them! I agree with Barbara Patterson when she said the most
knowledgeable would live the longest!

Sept. 18 12:38 AM
 From:

. . .I think it is really important to find a doctor whose specialty is
movement disorders. We drive 2 hours to get to mine. For free literature,
contact the National Parkinson Foundation and the American Parkinson
Disease Association. Tell them you are newly diagnosed and would they
please send you any and all booklets, brochures, etc. that are available.
There is also the APDA  Young Parkinson's Information and  Referral
Center . Ask them to send you The Young  Parkinson's Handbook and if you
have children ask them about PDKIDS.

Sept. 18 4:00 PM
FROM: "Newbie"
RE: RE: Tell me more

Thanks to you . . . who have responded to my questions… It is the first
time I have actually talked about my PD with anyone and after the initial
typing through the tears; I realize I am not alone at all. There are a
lot of people like me out there who have coped well with this disease and
are really living their lives. Somehow, that makes it easier for me. You
have answered my questions and offered suggestions which no one else has
been able to do. Thanks to all of you and keep hanging in there. I hope
someday to be able to help others in the way you have helped me.
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To "Tell me more" author --  I'm sure you have helped others too.

To Katie  - I am also 50 years old, and was diagnosed 5 years ago. Please
feel free to email me if you have any questions or want to talk with a
peer.
Best wishes to all,
Linda Herman
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